The European Court of Human Rights ruled Tuesday a hospital can discontinue life support to a baby suffering from a rare genetic disease. His life support will be switched off Friday, his parents said. Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients. Charlie is on life support and has been in the intensive care unit at the Great Ormond Street Hospital for Children in London since October. His doctors wish to take him off life support, but his parents disagree.
Charlie's parents, Chris Gard and Connie Yates, wanted the hospital to release Charlie into their custody so they can take him to the United States for an experimental treatment. "The domestic courts concluded that it would be lawful for the hospital to withdraw life sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement, and the experimental therapy would be of no effective benefit," a press release from the court announcing the decision said. Charlie's parents appealed to the UK Supreme Court to decide the best interests of their child. After they lost that appeal, the 10-month-old was due to have his life support switched off at the end of the day June 13. Gard and Yates then filed a request with the European Court of Human Rights, an international court based in Strasbourg, France, to consider the case. The original ruling to provide life support until June 13 was extended by European Court of Human Rights initially for one week, until June 19. Rather than making a decision then, the court granted a three week-extension, until July 10, to allow for a more informed decision by the court. That extension ended Tuesday with the courts decision.
"There will be no rush by Great Ormond Street Hospital to change Charlie's care and any future treatment plans will involve careful planning and discussion," the hospital said in a statement after the decision was announced. They added that their thoughts are with Charlies parents. "We are utterly heartbroken spending our last precious hours with our baby boy," Charlie's parents posted on Facebook Thursday. They went on to say the system had failed their son.
Under British law, parental responsibility includes the right to give consent for medical treatment, according to the British Medical Association. However, parental rights are not absolute, and in cases in which doctors and parents disagree, the courts may exercise objective judgment in a child's best interest. In April, a judge tasked with ruling on the impasse between doctors and parents decided in favor of the Great Ormond Street Hospital doctors. In his decision, Justice Francis said life support treatment should end so Charlie could die with dignity. The boy's parents challenged this ruling in May, yet it was upheld by a Court of Appeal. Three Supreme Court justices later dismissed another challenge from the couple.
Since Charlie's birth, "his condition has deteriorated seriously," the UK Supreme Court stated in a decision June 8; his brain is severely affected, and "he cannot move his arms or legs or breathe unaided."
On this basis, the court ruled that the child's life support should be switched off June 13, but the family appealed to the European court. Charlie's parents argued that the UK courts gave insufficient weight to their own human rights, and some of Charlie's human rights, in their decision-making, Wilson said. After the European court's ruling to extend the deadline while judges considered the case further, the Supreme Court told doctors it "would not be unlawful" to continue to provide life support.